EDS is a not so rare but rather a difficult to diagnose multisystem connective tissue disorder that is often misdiagnosed, misunderstood and certainly under-serviced.

Ontario to set up clinic for people with rare disease EDS

“People living with Ehlers-Danlos Syndrome and other rare diseases face enough challenges on a daily basis that finding the right care and support in Ontario shouldn’t be one of them. The new initiatives our government is pursuing will help people living with Ehlers-Danlos Syndrome and other rare diseases access the supports they need so they can receive the highest quality of care close to home.”
– Dr. Eric Hoskins, Minister of Health and Long-Term Care

“The establishment of the joint adult and pediatric EDS clinic is a big step forward in providing multi-disciplinary care and treatment for EDS patients in Ontario. This important model may also serve the needs of patients in the future who have similarly rare and complicated disorders. I am delighted that Minister Hoskins has supported the recommendations of the EDS Expert Panel.”
– Dr. James T. Rutka, Co-Chair, Ehlers-Danlos Syndrome Expert Panel, ILC Medical Adviser

The ILC Foundation represents Canada in the international effort to advance evidence based diagnostic and treatment criteria for Ehlers-Danlos Syndrome! Pictured above includes Susan Hawkins, ILC Director & Ehlers-Danlos Society Vice Chair, Dr. Roberto Mendoza and Dr. Gail Ouellette, ILC Medical Advisors.

EDS Petition & Chronic Pain Awareness Award presented to the Crawford family at the Summit Garden Chinese Cuisine 18th Anniversary Charity Dinner for the ILC on April 15th

MPP Michael Harris hosts Press Conference – Brooklyn Mills, Darren Crawford, Rebecca Mills and Erika Crawford speak at Queen’s Park Press Conference on Rare Diseases for EDS, which led to the MOH announcement on EDS Leadership Panel and Report

ILC provides in-kind contribution support to Canadian Institute for Health Research (CIHR) Strategic Patient Oriented Research Grant with EDS and chronic pain patient-engagement session at the Sick Kids Peter Gilgan Centre for Research and Learning

Federal Health Minister Hon. Jane Philpott announces Chronic Pain CIHR SPOR $12.5 Grant Recipient at McMaster on March 31, 2016 – see ILC Media Announcement

MPP Michael Harris, ILC Health Resource Consultant Nicoleta Woinarosky & ILC Director Allan Gordon at CHEO Awareness Event

Canadian Press Announcement for EDS Clinic – February 27, 2017

Susan Carleton, ILC Manager, Special Projects, Hon. Minister Eric Hoskins, Rebecca Mills, ILC Director, Sandy Smeenk, ILC Director, Dr. Juan Guzman, General Internal Medicine, Assistant Professor, McMaster University, ILC Medical Adviser

  • Ehlers Danlos Division

    Ehlers Danlos Division of the ILC

    To inspire hope and contribute to the health and well-being of children and individuals living with Ehlers Danlos Syndrome (EDS) by providing a care model of health promotion and knowledge sharing partnerships through a family centred, awareness and education resource network.

  • Announcements

    ILC Centre of Excellence – Toronto Stay Tuned

    ILC Support and Accessibilities Centre specializing in EDS and related conditions that cause altered physical abilities – Stay Tuned

    For more information, contact

  • Research Projects

  • National Pain Strategy

  • Upcoming Events

    1. Ontario Peer Support Meeting – Oakville, Ontario

      April 29 @ 12:00 pm - 3:00 pm
    2. Uptown Hair Studio Cut-a-Thon

      May 7
    3. Halifax Support Group Meeting

      May 7 @ 10:00 am - 12:00 pm
    4. Simcoe/York Ehlers-Danlos Syndrome Peer Support Group Meeting

      May 20 @ 12:00 pm - 2:00 pm
    5. Ontario Peer Support Meeting – Location TBD

      May 27 @ 12:00 pm - 3:00 pm